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Need Advice Any mito baby with Scoliosis - Parent-2-Parent & Reflux in Children
Any mito baby with Scoliosis
Is there any baby with mito wear braces for scoliosis???
My D's ortopedist was not concerned with her 30.5 scoliosis and told us to follow up in a year.
That was a month ago.
I just came back from appt with another scoliosis specialist.
We took another X-ray today and it was 21 degrees.
He said it is possible for the angle to be little off depending on the posture.
It's funny how it can be off almost 10 degrees bet two doctors.
Anyways, Even with 30 degrees, he believes Kailey will not benefit from braces.
He said hers doesn't fall into any type of scoliosis(idiopathic or congenita).
He would call it neuromusclar scoliosis.
And braces will not prevent from getting worse given her mito dignosis.
And there is absolutely nothing I can do to help other than putting her on upright position.
I thought there are mito babies with scoliosis wear braces.
I need some advices please.
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Re: Any mito baby with Scoliosis
Different age here- DD is 14, but I'll share what I've been told.
DD has mito and kyphosis and scoliosis.
Her kyphosis curve is pretty bad.
What we have been told is that the problem with kids with neuromuscular issues is that if you put them in a brace you atrophy the muscles that they have and end up losing lots of tone.
Essentially they told us if she goes in a brace she'll never come out of it.
Yikes. Surgery is sometimes an option- where they fuse the spine.
Julie technically qualifies, but the doc says that until she is enough pain that she's needing narcotics then the hardship of surgery on a mito kid is not worth the benefit.
We may eventually get there, but it's a big operation and in his words he feels she would take a "big hit" from doing it.
So, for the moment we're just living with it.
He also told us that they used to automatically do surgery at certain curvature levels, but now the newest research shows that cardiac and pulmonary function aren't necessarily affect the way they thought so they take it on a very case by case basis, mostly pain is the deciding factor.
Hope this helps- sara
By the way= she's absolutely precious!
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Re: Any mito baby with Scoliosis
I know another child who has mito and has scoliosis - I think it is common especially in adolscent females with muscle issues.
Hope things work out!
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Re: Any mito baby with Scoliosis
Carter has recently been diagnosed with scoliosis.
We have an appointment at the end of December with an orthopedist so I'm not sure if anything will be done at this point.
Our ped says that they usually monitor the scoliosis for a few years, depending on the severity and location of the curve, before intervening, to see how kids grow in to their curve.
She said it's less common these days for kids to be braced or to have surgical intervention, unless the kiddo is experiencing complications related to the scoliosis.
HTH.
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Re: Any mito baby with Scoliosis
hmm...I'll have to ask my DS's docs about this.
He has mito, low muscle tone, scoliosis and was prescribed a TLSO brace.
We were told the brace wouldn't make his existing curve better, but could hopefully keep it from getting worse.
We haven't had a follow-up yet, so I have no idea if it is getting better or worse.
I guess I need to do some probing to see if this is the right course...I had never heard that it could cause more harm than good.
Good luck!
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Re: Any mito baby with Scoliosis
Well,maybe it has to do with age?
My DD is so much older...
Dunno- as usual there are lots of factors involved in each child.
I think it's just important to have an ortho who knows about muscle myopathy issues- in our case when I was trying to decide who to take her to I actually called our local MDA office and asked them for advice.
I'm interested in hearing what you find out.
Our physiatrist seems to agree with the ortho.
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Re: Any mito baby with Scoliosis
Both my boys have scoliosis pretty bad but do not wear body jackets.
They have them but it is too restricting respiratory wise for them.
Hugs
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Re: Any mito baby with Scoliosis
Sorry.
Just got back on the computer.
Thank you all so much for sharing
So I see that it depends on other complications but in more cases they don't like to brace them.
For Kailey, it is still way too early to decide on te braces I guess.
What you shared will be useful info for us later on.
I would love to hear more when you guys have next follow ups.
I really appreciate on your thoughts.
:)
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